Re: self-esteem affecting CMT?

[Guest guest]

Hello Gretchen

To answer your question fully It would take a book! CMT affected my ability to

do so many things even when I tried harder then “ normal “ people. It

affected it in a negative way! I would practice sports in secrecy so I would

look better for the time I spent on it, and still I was pitiful at the sport, It

must be me! I must be bad (low

self-esteem)………………………………................................\

...............................................................................on

the other hand just to keep believing in my self at those times , when that

belief was tested by the above type things means that it is a tested belief,

It’s not me not trying hard enough, It’ not that I am somehow bad or

unworthy. It was a lot harder to keep believing in my self (self-esteem) before

I had a reason or a name (CMT) for why I was having so much trouble.

Rocky

Dear ers,

I have a question. I noticed on our poll that many said they feel CMT

affects their self-esteem. Can anyone elaborate on this for me?

1) I mean, on one had does CMT and your symptoms make you feel ashamed

or guilt ridden?

2) Or does life with CMT enhance your self esteem in a positive way due

to your fortitude to accept daily challenges and changes in symptoms?

I feel I am in Part 2 with CMT and my self esteem. Learning to accept

the challenges and changes just keeps me going and I get emotionally

stronger with each day.

~ Gretchen

[Guest guest]

In a message dated 1/12/02 7:09:03 AM, slemin46@... writes:

<< They want to go to Orlando and take in all the sites, They want Oma to go

and do the rides with them. >>

I suggest you rent a wheelchair and give your grandchildren a new learning

experience that will benefit them for the rest of their lives. They need to

know that people with disabilities are still people, and that they don't

change just because they have more limited movement. They also need to know

there are no guarantees in life. Who knows what tomorrow will bring. But you

will still be the same loving Oma they always knew. They can learn the art of

compassion, and thinking of others rather than just themselves, as children

typically do.

It's an important lesson in life. Help them learn it. It's never too early.

Kat

Seattle USA

http://icewindow.com

[Guest guest]

Gretchen,

Finding out that I have CMT has affected my whole

life. It is affecting my feelings of self worth. I

didn't grow up with it in the since that my son and

father did. I haven't worked in the public since

1989. (taking care of loved ones as they were in the

process of battling for their lives) I went to back to

work this past June. December I find out that that my

aches and pains are pointing to something that I can't

really fight, just live or survive with. The past

week I have been home, off work, with spasms in my

back that I am having trouble managing. My hands don't

want to hold my blood pressure equipment, I have

trouble pumping the cuff up to take the BP's. My

finger tips don't want to feel wrist pulses. AND I may

be out of a job come this next Monday.

I want to crawl in a hole and just dry up. I don't

want to feel this way. I have gone out shopping, with

my husband. Bought me a new Kia Sportage that I can

get into. Plus looking at medical equipment that will

help me get out of bed in the morning.

The med's. I am now taking are actually mild ones,

Darvocet, Valuim, and Motrin, but they may me 'hazy'

and believe me when I say I have " blonde roots "

anyway.

I look at my wonderful husband and see the loving

compassionate man I fell in love with 22 years ago. I

thought he had lost his mind when he wanted to take me

and my 4 kids into his life anyway. I knew he didn't

have any idea what a load he was taking on. We

struggled through 5 teenagers in our home at one time.

We survived it and now are living in Paradise looking

forward to our life together, and I throw this into

his lap. He assures me he loves me and wont leave

because in the future I will not be able to do all

that we planned to do. This damned CMT is progressing

faster that I thought it would. It waited until I was

55 years old and then slammed me. I don't like it!

Oh I know I can still go, travel and see things that I

wanted to see and do. But 3 of my 14 grandchildren

are coming for a visit during spring break. They want

to go to Orlando and take in all the sites, They want

Oma to go and do the rides with them. They want Oma

and Papa to play in the sand at the beach with them.

They want the Oma and Papa they had last year. The

ones that could play in the yard and chase balls. I

never was good at throwing, catching or chasing with

them but enjoyed telling them how to do it and showing

them 'tricks' they could do. I am afraid now.

Well, enough of feeling sorry for myself. I guess one

is allowed once in awhile to do this but still doesn't

make me like it!

Love to all in our group

Susie

--- Gretchen Glick <liliwigg@...> wrote:

> Dear ers,

>

> I have a question. I noticed on our poll that many

> said they feel CMT

> affects their self-esteem. Can anyone elaborate on

> this for me?

>

> 1) I mean, on one had does CMT and your symptoms

> make you feel ashamed

> or guilt ridden?

>

> 2) Or does life with CMT enhance your self esteem in

> a positive way due

> to your fortitude to accept daily challenges and

> changes in symptoms?

>

> I feel I am in Part 2 with CMT and my self esteem.

> Learning to accept

> the challenges and changes just keeps me going and I

> get emotionally

> stronger with each day.

>

> ~ Gretchen

>

__________________________________________________

[Guest guest]

I believe that one of the hardest things about CMT is it's the game that changes

as you play!!!

Every time I adjust to it it changes again, I find myself in a constant state of

adjusting

Sometimes I wish I would have just assumed the worst at the start, it's like

climbing a mountain and you keep having false summits, you think you have a

hundred yards to go but every time too get there there is a nether hundred

yards

I guess I should just be thankful that is slowly progressive!!!!!

I think this is a response to you Sue-thanks very much for that post!

Rocky

---------~->

[Guest guest]

I certainly don't feel guilt-ridden or hide myself away because of CMT.

Since becoming ill I have changed seriously as a person. I am stronger and more

determined perhaps because in some ways I feel I have to prove that I'm just as

much a person as I was when I could walk. That may seem silly but I've often had

the experience where people will talk to rather than me because I'm in a

wheelchair and that really annoys me.

I think that when your life changes because of illness/disease you do stop and

think. I went into a wheelchair at the age of 39 because I couldn't walk more

than a few steps, the doctors accepted I couldn't walk but no one could tell me

why, what was wrong with me or what had caused it. As well as not being normal

it was scary!

It was then I had to decide whether I was going to 'lie down and die' or get on

with life. I decided to get on with life although there are times when I do

'hide' for a few days whether it be when I'm feeling really rough or just need a

bit of space - this is okay - it doesn't mean I'm giving in - it is just having

some breathing space.

So after all of that - I suppose the answer to your question Gretchen is CMT

does enhance my self esteem in a positive way due to my fortitude to accept

daily challenges and changes in symtoms.

I could have just 'ticked' box 2 and saved you all from reading this - LOL

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

----- Original Message -----

From: Gretchen Glick

ers at groups

Sent: Saturday, January 12, 2002 2:57 AM

Subject: [] self-esteem affecting CMT?

Dear ers,

I have a question. I noticed on our poll that many said they feel CMT

affects their self-esteem. Can anyone elaborate on this for me?

1) I mean, on one had does CMT and your symptoms make you feel ashamed

or guilt ridden?

2) Or does life with CMT enhance your self esteem in a positive way due

to your fortitude to accept daily challenges and changes in symptoms?

I feel I am in Part 2 with CMT and my self esteem. Learning to accept

the challenges and changes just keeps me going and I get emotionally

stronger with each day.

~ Gretchen